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Pre-eclampsia and high blood pressure in pregnancy

Medical research about self-monitoring blood pressure in pregnancy

Several women we spoke to had taken part in a medical research study called ‘BuMP’ (‘Blood pressure Monitoring in Pregnancy’). This study asked women to self-monitor their blood pressure for the second half of their pregnancy until six weeks after birth. The study was looking at how practical and acceptable self-monitoring of blood pressure in pregnancy was. Some women who participated in the BuMP study went on to develop high blood pressure problems, but others didn’t.
 

Kat found it interesting taking part in the BuMP study and it made her more aware of her blood pressure during the pregnancy.

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Age at interview: 27
Sex: Female
Age at diagnosis: 27
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I found it quite straightforward and I found it very interesting because sometimes, in the morning, I’d do it before work and start rushing around, I knew it was going to be a little bit higher so I was like, let’s sit down for a couple of minutes to calm down and so it was quite interesting to look at the slight changes, especially as I became more pregnant and you get more, you know, you get a bit more breathless and a bit more sort of more weight to carry around and everything like that. It, the small, very small things that would impact it and I would notice, at the end of the week, it could be slightly higher because if you’re a bit stressed after a week at work, because sometimes work can be frantic, you do notice that. And, actually, it helps self-regulate as well, to make sure that, actually, if that’s going to impact it to, keep it down a wee bit.
 

Helen Y was glad she took part in the BuMP study and thought that self-monitoring of blood pressure in pregnancy should be offered to more women.

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Age at interview: 31
Sex: Female
Age at diagnosis: 31
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I think it’s fantastic. I would encourage women to take part if they could.

Yeah?

And I think, you know, it would be great if it could be part of general pregnancy healthcare.

Yeah. Yeah.

I do. I think it’s so important, I know women that have had pre-eclampsia and they’ve been shocked by going to clinic feeling fine and then, you know, they’ve got a sky high blood pressure and, you know, then it was a real panic and a rush and they have a really traumatic labour sometimes when they had to be induced.
Study design
 
The BuMP study asked women to check their blood pressure from half way through their pregnancy until six weeks after they had given birth. They were asked to take their blood pressure on three days each week (Monday, Wednesday and Friday). On each of these days, women were asked to test their blood pressure twice in the morning (five minutes apart) and twice in the evening (five minutes apart). They were advised to rest for a few minutes before testing, so that their blood pressure was more likely to be at a ‘natural’ level. The readings were then sent by text to the study manager (via a system called ‘Florence’ or ‘FLO’) and/or written down by the participant in a booklet. Participants could sign up for text reminders, which some said were really helpful. Some found the reminders annoying, especially if they had already sent their blood pressure readings in but the study’s recording system hadn’t logged it yet.
 
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Samantha Y learnt how to use and understand the blood pressure monitor in the BuMP study.

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Age at interview: 29
Sex: Female
Age at diagnosis: 29
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It’s got a booklet and it explains like, because obviously I didn’t know anything about the readings, I didn’t understand what the numbers meant, but it explains, it explains in the book as well, so you have a quick look at that and then you get used to it really quickly so.

Yeah and what about understanding if, you touched on it a bit a few minutes ago, if there’s a high reading?

[mm]

Understanding what to do, was that really clearly explained, you know, you know what you needed to do if your reading was too high?

Yeah, the number that you text in to, you have to text in every reading that you have, it tells you what to do. It texts back and says, if, you know, it’s fine, it will just say, thanks, do it again later, sort of thing or if it says, it’s raised, do it again in four hours, or it’s high, do it again in five minutes and if it’s still high, it tells you to ring your GP or out of hours immediately. 
 
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Ify knew it was important that she keep checking her blood pressure for six weeks after having her baby. However, it was often difficult to fit in with family life.

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Age at interview: 35
Sex: Female
Age at diagnosis: 34
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And did you understand why it was important to carry on testing on after you’d given birth?

Well, yes, because anything could happen any time because it’s not necessarily just when you’re pregnant or before pregnancy, you know, one could fall ill after pregnancy. So yes, I knew to, I did them. I still do understand the importance of having to take that, even after baby had arrived

It was very it was very difficult, especially at the, after I had baby.

Between few weeks to having baby and after I came back home from hospital, it was very difficult but I didn’t want to give up because I thought, I’ve started this and I need to finish this so I carried on and went along as, some days were blank and I felt really very guilty, you know, because I thought, well, I should have done this but again, new baby, the family and so many things happening, I couldn’t really do much. But those days, some of them were left blank and other days I took them.
 

Linda explained her understandings about the BuMP study and what taking part involved.

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Age at interview: 30
Sex: Female
Age at diagnosis: 30
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What did you understand about what the study was looking for?

It was looking for whether measuring sort of blood pressure in pregnancy can detect-, is effective in detecting any sort of blood pressure related problems so then, obviously, you can see patterns and that sort of thing because I’d have it done with the midwife, with the midwife though, obviously, I was doing it three times a week. Was how I understood it.

Yeah. Great and what did you understand about what the trial involved, at that stage?

The measuring your blood pressure twice a day three times a week, recording it on the paper chart and texting them to the text service and then seeing [Research nurse] was at certain appointments and going for a similar thing there. I think it was 12 week, I think it was 16 weeks, possibly two others, I’m not sure but there were four additional midwife appointments any way.
Getting involved in a study about self-monitoring blood pressure in pregnancy
 
Most women in the BuMP study had been told about it during an early routine check-up (usually in the first trimester/12 weeks). A few had heard about the study elsewhere - Vicki saw it advertised in a newsletter. Women invited to join the study usually had one or more ‘risk factors’ for developing pre-eclampsia.
 
Women started in the study by first meeting with the research midwife/nurse. Most women said this was helpful, especially for those who hadn’t been given much information when the study was first mentioned to them. The meeting covered a lot of information and was an opportunity to ask questions. Women were also given written information they could look at afterwards. Elaine found it helpful to be given an A4 folder so that “all the information was in there together”. Taking part or not was entirely voluntary. Some talked to their partners about taking part, but most said they felt it was an easy decision to make and their partners were supportive of their choice.
 

Philippa saw a research midwife who explained about the BuMP study.

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Age at interview: 33
Sex: Female
Age at diagnosis: 33
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She said it was a pilot study looking at whether monitoring your blood pressure throughout pregnancy would allow symptoms of pre-eclampsia and high blood pressure to be picked up earlier and be treated earlier and, because of my past pregnancy, I was quite interested in taking part just for my own peace of mind as well. So, yeah, kind of killed two birds with one stone really.

[Laughs] 

Did them benefit and for me as well.
 

Amy was talked through the study and given a folder with information about the BuMP study.

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Age at interview: 34
Sex: Female
Age at diagnosis: 31
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So I had a folder with all of the information in and I had a read through it and sign up and then I had a, I was given a little blood pressure monitoring machine and shown how to use it and how to look back at the recordings as well, just to check that it had been taken. And then a form within recording, recording each of the recordings that I’d had.

As well and then there was like a three page form as well that I had to fill in about exercise and exertion as well, which progressively over the three months started off as, yes, I’m very active to the, I just sit on my backside and don’t do very much [laughs] and I was kind of laughing at how different, I was kind of ticking all the boxes of how well I was feeling to day went from like a well, it’s a nine to about a two today and I’m very cross about it.

[Laughs]

So there was lots and lots of information in there and yeah, about kind of how it would be used and kind of the style of study that I was taking part in, yeah
Reasons for taking part in the BuMP study
 
Some people had taken part in health research before; for others, this was their first experience. Women gave several different reasons for taking part. 
  • To help build medical knowledge and to help other people with their pregnancies in the future. Some felt comfortable doing the study because it seemed “simple” and “non-invasive”. 
  • To manage worries and anxieties about their own pregnancy. Being able to check their own blood pressure was reassuring for some and many felt it was better to know sooner rather than later if there was a problem. If there was any cause for concern, they could go see a medical professional and often felt more confident about doing so.
  • Women said it was more convenient to check their own blood pressure if they had any worries, rather than making an appointment with their GP or hospital. Some women disliked having their blood pressure checked by doctors or nurses and thought it gave them higher readings (known as white coat hypertension), so they preferred to monitor themselves.
  • Women liked the extra support from the research midwife/nurse who they could get in touch with if they had any worries, concerns or questions.
 

Ruth X explained some of the reasons why she wanted to take part in the BuMP study.

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Age at interview: 42
Sex: Female
Age at diagnosis: 42
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And also I mean, from a selfish point of view, taking part in a trial also allows you access to other healthcare professionals so, you know, if you had issues about certain things, couldn’t get hold of your own practitioners, there is a help line and a number for you to contact them and then they’re more than willing to get advice for you if you’re after a particular issue. So it gives you another access in to other health professionals if you if you need to. I haven’t needed to but, you know, it’s there if I did, so I mean that’s a sort of, you know, selfish reason for doing it but, you know, it’s only it’s only one of the reasons. It’s not the sole reason I’ve taken part in in the trial.

And do you find that reassuring that you’ve got.

Yes.

Another layer of.

Yeah.

Professionals? 

If you need to, yeah, if you need to. It gives you, I think in, certainly in other people that have taken part in trials as well that I’ve talked to and things like that, I think the extra monitoring or the extra provision of information or people that you can go to talk to is very reassuring and helpful for people. Because sometimes, I mean you do, although I have to say so far the information that I’ve received from my healthcare providers from the [special care] team and my GP and midwife has been very good, you know, that not, that’s not always been my experience in the past and you sometimes, the internet is very good for providing some information but you do have to balance it with the evidence and knowing the right sources to go to and also it it’s also very much, certainly in my case, everything is very, very individual and it’s how your own body, so that you can find some pieces of information say x, y and z is going to happen but, actually, that’s probably not going to happen to you and you need to have a professional to talk through your particular circumstances. 

And you do sometimes wonder, you know, whether or not you’re going to be able to get that time with a health professional. So far, I’ve not had a problem. They’ve answered everything I’ve needed to have answered but, you know, if it had been the same as my previous pregnancy, where I wasn’t getting information and taking part in a trial, that, in within that pregnancy, I would have really been grateful for the extra information or the extra place I could go onto and ask for extra advice or a second opinion as I didn’t feel they were acting in my best interests then.
 

Linda took part in the BuMP study because there were benefits for herself and to research more generally.

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Age at interview: 30
Sex: Female
Age at diagnosis: 30
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And why did you decide to take part?

I just I just thought, well, you know, research is always important. It wasn’t going to be any sort of, an inconvenience and I couldn’t see any negatives from my perspective. You know, it would mean that any problems I would have would be picked up and yeah, I just sort of, I couldn’t see any negatives from my side of things and, you know, certainly research is so important so I figured I would take part.
 

Ruth Y talked about her motivations for taking part in the BuMP study.

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Age at interview: 40
Sex: Female
Age at diagnosis: 40
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Well, I’m a scientist so I understand and believe in the power of research and, you know, am quite willing to, I mean I know it’s difficult to get people to take part in these things because they don’t want to and I feel as if you appreciate that research is important, that I was willing to put a bit of time into to, you know, to be a guinea pig I guess.

Be a guinea pig, yeah, great.

And, you know, you’re benefiting other people aren’t you and, it’s very, unless you actually study these things, things are not going to get better for anybody. They’re not going to get better at diagnosing or understanding the condition, so that was it and a general, on a personal level, you know, nosiness. You know, I wanted to find out a bit more about these conditions because I realised it was, I was a higher risk of developing it myself.

So, from my own sort of personal interest and also concern about myself because I realised I was going to be in a privileged position I think if I was in a situation that I could monitor myself then, you know, as a way of being able to reassure myself as well and I felt that was actually really, really valuable during the study.
There were sometimes challenges in reality. You can read more about the practicalities and emotional impacts of self-monitoring blood pressure (as part of a research study or for other reasons) here.
 
Support from research midwives/nurses
 
Women participating in the BuMP study saw a research midwife/nurse several times for appointments (in addition to their routine antenatal care). Most people had contact with just one research midwife/nurse each time, though a few people had seen several. Helen Y saw a different research midwife after the original person went on sick leave. The research midwives/nurses were friendly and helpful. Komal said her research midwife gave her extra support which she otherwise wouldn’t have had from the doctors and midwives she saw as part of ‘routine’ antenatal care. Elaine found it useful to be able to ask her research midwife a question she had forgotten to talk to her community midwife about earlier in the day. Research midwives/nurses sometimes gave emotional support as well as practical advice – Abigail said “it just gave me a huge amount of reassurance to know that she [research midwife] was there if I needed her”.
 

Abigail liked having some continuity with seeing the research midwife in the BuMP study.

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Age at interview: 40
Sex: Female
Age at diagnosis: 40
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They mentioned the study and so I readily agreed to it. Besides anything else, I just thought it would be good for me to monitor it at home.

And I figured, the fact that I was signing up to this study, would hopefully put me in good favour with the midwives, [laughs] so coming down the line, I might need something, you know. And, actually, it turned out that [research nurse] was the only midwife that I had any kind of relationship because I didn’t see the same midwife twice, at all, either at the doctor’s surgery or the hospital or the or the consultant. I didn’t, I never saw, I never actually met the consultant. I only ever had his registrars so you don’t build up any relationship with them. Didn’t build up any relationship with any of the midwives because I never saw them more than once. So [research nurse] was the only person that I saw on a regular basis and, actually, got to know.
Having extra meetings with the research midwife/nurse on top of ‘routine’ antenatal appointments could mean more time off work and extra travel arrangements. This could be a struggle, though most people said it wasn’t too bad. Sometimes research midwives/nurses visited the woman at home. This was particularly appreciated by those who would have struggled with travelling (for example, if they didn’t drive or after a caesarean section). 
 
Some women combined appointments (having the research midwife/nurse sit in on the routine appointment as well) or scheduled the appointments one after the other. Whilst this worked well for most women who tried it, there could be downsides. Helen Y was told she could cancel a routine appointment around 16 weeks with her community midwife and instead have the meeting with her research midwife. She thought this was a good idea as it would save her making two trips. However, Helen Y didn’t feel she received the same level of care or information at the combined appointment with her research midwife as she would have had with the two separate appointments. She wasn’t given her Bounty pack or the chance to hear her baby’s heartbeat by Doppler (a machine used to estimate blood flow). 
 
Some found the other medical professionals involved in their care were unaware of the BuMP study or didn’t trust the self-monitoring readings. Also, some women found that readings considered ‘high’ in the study were different to those considered high by their hospital. Vicki said if she had a self-monitored blood pressure reading of 140/90 or more then she would be contacted as part of the study and encouraged to seek medical help, but her hospital were only concerned if they took her blood pressure and the reading was 150/100 or higher.
 

Sally’s research midwife joined her in the ‘routine’ antenatal appointments, which saved her having to get time off work to go for a BuMP study meeting.

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Age at interview: 38
Sex: Female
Age at diagnosis: 38
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I saw midwives up in [town] there’s a birthing centre, so it’s not at a main hospital but it’s a midwifery run centre.

Which is very good and we went along and saw the midwife and did the usual check-ups and things and [research midwife] came along to join in with those, some of those check-ups along the way. So rather than having to keep going back to hospital for different meetings or different check-ups, she would actually join the meetings together, so it would, along with an appointment for the midwife, then [research midwife] would come along and do the BUMP analysis, at the same time, and just extend it maybe by half an hour.

Which is easier when you’re needing to get time off of work so you can combine the appointments together.

Okay. So you found that really helpful?

Yeah, that was good because it, that’s the difficult thing trying to justify time out of work, even though you have to, for, an, an employer has to let you go for maternity appointments, it’s trying to justify that time off and explain why.
 

Elaine said it was helpful that her appointments with the BuMP research nurse were usually timed for after her ‘normal’ routine appointments, adding on about 20 minutes.

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Age at interview: 33
Sex: Female
Age at diagnosis: 33
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The contact that I’d had with [research midwife] and, you know, she, she came to my GP surgery so we didn’t have to, I didn’t have to go anywhere else. So kind of the I had my appointment with, she’d text me and say, oh, we’ll meeting, I’d text her and say when my appointment was and the time, and she said, “Okay, well, I’ll be there at that time.” And then she’d normally text me and say, “Oh, I’m in I’m in this room.” Or, “I’m not sure what room I’m in, go and ask reception.” So I’d go into my community midwife and then I’d just go sort of a couple of doors down and go and go and see [research midwife]. So that actually, suited me suited me well.
 

Helen Y took part in the BuMP study but was also sent home with a 24 hour monitor after a high blood pressure reading at a routine appointment. She felt it was unnecessary as the reading had been fine earlier when she had tested it herself.

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Age at interview: 31
Sex: Female
Age at diagnosis: 31
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Oh, one other thing actually, I kept telling, I think had once when I was in clinic and my blood pressure was raised but I’d done it in the morning and it was fine.

As part of the trial and they did it again there and then and it was fine. It was just a one-off, you know. As in, I was rushing round. I’d just had a scan. I was really excited kind of, you know what it’s like. And they wouldn’t listen to me that I’d done the trial, I had my folder there, I said, “Look, everything has been fine. I did it two days ago, it was fine. I did it this morning, it was fine.” But they wouldn’t listen to me.

You know, they kind of said, “Oh no, you need 24 hour blood pressure monitoring.” And things like that and I said, “No, I don’t.”

But they kind of forced me to have it anyway.

They didn’t say, “I’ve never heard of that.” But they just didn’t listen to me, when I was I was showing them the folder where I’d written it all down.

But they just weren’t really interested and it felt like they weren’t I don’t know, they just didn’t give it enough credence of what it is.

You know, they don’t necessarily know what monitor you’re using and things like that because I know there are some dodgy monitors out there.

Yeah.

And it just, it would have been nice for them to say, “Oh yeah, okay, obviously, it’s fine. If there’s an issue on Monday, give us a ring.” So that was a bit frustrating.
Technical problems and uncertainties in the study
 
Some had difficulties working the blood pressure monitor or texting their readings to the BuMP study manager. Others found the equipment quite easy to use, especially if they had taken their own blood pressure before or had done it as part of their job. A few people noticed gaps where more information could be provided about the BuMP study. For example, Amy placed the arm cuff too low the first time she tried to take her blood pressure and suggested that a diagram or written explanation would have been helpful. 
 
Sometimes the batteries in the monitor needed to be replaced. Helen Y also had an experience when the machine went “a bit crackers”. Vicki had been unsure about carrying her monitor in hand luggage for a flight and so took the batteries out, but worried it might lose the data stored on it. Samantha Y hadn’t been aware that the blood pressure monitor recorded all the readings until the end of the BuMP study and she felt bad that she had let some friends use it when they asked.
 

Komal said the blood pressure monitor was easy to use in the BuMP study. It was reassuring when the measurements taken at home matched those at medical appointments.

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Age at interview: 23
Sex: Female
Age at diagnosis: 23
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It was very easy and on the device, I just had to press a button and everything was fine because and it wasn’t very chance of such an error there. I have taken a 100 readings or something like that, during that time, but only one time I put the cuff wrong and the reading wasn’t there but 99% of those times, it was accurate. And whenever I had, it was time for me to take the reading and then I had to go to my GP for a regular appointment, the reading was almost accurate, fine, she took that, it was good. So the device was also good because it was very easy to use and very easy to understand.
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